Getting It Right: What I Wanted When I Became a Caregiver
Many of you know my story—that I was a hurricane when I was nine months pregnant and my husband was recovering from a spinal cord injury which happened six months earlier and left him paralyzed from the stomach down.
Many of you also know that I wasn’t too happy about that and have advocated quite fiercely both as a caregiver and for those with disabilities in disasters. Well, I finally did something about that. But more on that in a few days or so. In the meantime, one of my biggest frustrations was that every single time I took my hubby to the hospital (in two states) not one medical professional or social work organization ever sat down and spoke with us on how to keep safe in a disaster, let alone what we should do to prepare for one.
Yes, we know to get food, water, flashlight, etc. but do we know anything more then that?! I certainly didn’t and if it weren’t for my chasing people down I still don’t think I would know what to do or worse. So listed below is a new document that I unveiled recently at a nationwide conference hosted by Portlight Strategies on Disasters & Disabilities called “Getting It Right”: Getting It Right Personal EP Plan
The goal is to make everyone think, bring up discussions and hopefully education an individual with a disability and the family caregiver can prepare for an emergency. I also don’t want any family caregiver to ever step into my shoes at a moment like that. I guess this gives me a unique perspective into doing what I do.
Please review this if you get a chance and let me know all thoughts: good, bad or indifferent. I am happy to add to it as well. Sometime in the extreme near future this will also be posted on the organization’s website.
On a personal level, I want to know why I never got this document or the conversation that should have accompanied it.
What do you think?
All my best,
The Roaring Mouse
- Needed: Your Stories About Loss (caregiving.com)
- ARGH: It’s Not About Putting Your Life on Hold (caregiving.com)
- In Six Words, What’s a Caregiving Day Like? (caregiving.com)
- What If We Find Our Life in Caregiving? (caregiving.com)
- Now Available: The Caregiving Years, Sixth Edition (caregiving.com)
- Broadcast Your Caregiving Role: Buy Our T-Shirt (caregiving.com)